‘Most people have no idea what autism is’: Unpacking autism disclosure using social media analysis

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Edwards, C., Love, A., Jones, S. C., Cai, R. Y., Nguyen, B. T. H., & gibbs, v. (2023). ‘Most people have no idea what autism is’: Unpacking autism disclosure using social media analysis. Autism, 28(5), 1107-1119. https://doi.org/10.1177/13623613231192133

Publication date: 22 Aug 2023 Added to AutiHub: 5 Jul 2026 Type: Article Article language: English
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Authors

Publication authors
6
Publication authors identified as autistic
2 / 6 (33.3%)
  1. Chris Edwards *
  2. Abigail Love
  3. Sandra C. Jones *
  1. Ru Ying Cai
  2. Boyd Thai Hoang Nguyen
  3. vicki gibbs

Abstract

Autism disclosure can be a complicated decision that autistic people experience. Positive outcomes can include feelings of acceptance and support, but negative outcomes can include stigma and discrimination. Although a surge in research on this topic has led to more understanding around autism disclosure, the methodologies used may have limited who was contributing to the conversation and data. To overcome this, we analyzed 3 years (2020−2022) of social media data (Reddit and Twitter) as this was public information that did not rely on researcher data collection. Reflexive thematic analysis of 3121 posts led to the generation of four themes: People do not understand autism (with experiences related to employment, dating, healthcare and mental health), autistic people just want privacy and respect, autistic people can lead us forward and non-autistic people need to assume more responsibility. We discuss how autistic adults experience the impact of society’s lack of understanding of autism on a daily basis whether they disclose or not, and that it is everybody’s responsibility to challenge negative stereotypes and promote a more inclusive society. Lay abstract Autism disclosure – that is sharing their autism diagnosis or identity with a person or people – is a difficult decision for many autistic people. While telling people they are autistic can be positive and helpful, it can also create a lot of problems. What we have learnt is that disclosure is really complicated. Rather than asking research participants questions about what might happen, we looked at what people were saying on public social media posts (Reddit and Twitter) about what did happen. We used three years of posts that were related to autism disclosure from a wide range of adults (autistic and non-autistic). Four main ideas were created from our data, with the key finding being that society does not understand autism. This lack of understanding creates problems for autistic people in work, dating, healthcare and mental health. The remaining ideas were that autistic people should have privacy and be treated with respect, that autistic representation can help society and that non-autistic people need to do more to help autistic people. Our findings support that society needs to do more through autism advocacy, better media representation and more public role models. Increasing the accuracy of understanding of autism across society will mean that autistic people can feel safer to disclose if they want to.

Bibliography cited by this reference

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Cited bibliography overview

These indicators describe the bibliography cited by this publication. An author name is counted each time it appears in one cited reference, so the same person can be counted more than once. Names not yet linked to an author already present in AutiHub are treated as unknown, not as non-autistic. Last computed: 2 Oct 2026 14:00.

Cited references
55
With a DOI
49
Without a DOI, from raw bibliography text
6
11 / 55 (20.0%) cited references include at least one author identified as autistic.
References with data to complete
4 / 55 (7.3%)
References with detected author names
51 / 55 (92.7%)
Without detected author names
4
Without a structured title
4
Without a stable identifier
6
References with raw author names still to review
4
References with external metadata lookup issues
0
These indicators apply to cited references displayed on this page, after technical duplicates have been merged. A reference without a DOI can still support author statistics when a title and author names are available.
Author names detected in the cited bibliography
176
From DOI or external metadata
176
From validated raw bibliography text
0
Raw names already validated
0
Raw names still to review
12
96 / 176 (54.5%) names are linked to an author already present in AutiHub. 80 / 176 (45.5%) names are not yet linked.
Names linked to a person identified as autistic
14 / 176 (8.0%)
Calculated across all author names detected in the cited bibliography. Among names linked to an author already present in AutiHub: 14 / 96 (14.6%). Distinct people identified as autistic: 12 / 151 (7.9%).
  1. Axel Bruns , Jean Burgess , Tim Highfield (2014). A ‘Big Data’ Approach to Mapping the Australian Twittersphere . In Advancing Digital Humanities (pp. 113-129). Palgrave Macmillan UK.
    Type: Book chapter DOI: 10.1057/9781137337016_8 OpenAlex: https://openalex.org/W215111476
    Crossref OpenAlex OpenCitations
  2. Schwab Bakombo , Paulette Ewalefo , Anne T. M. Konkle (2023). The Influence of Social Media on the Perception of Autism Spectrum Disorders: Content Analysis of Public Discourse on YouTube Videos . International Journal of Environmental Research and Public Health, 20(4), 3246. MDPI AG.
    Type: Article DOI: 10.3390/ijerph20043246 OpenAlex: https://openalex.org/W4320493535
    Crossref OpenAlex OpenCitations
  4. Ru Ying Cai , Amanda Richdale (2016). Educational Experiences and Needs of Higher Education Students with Autism Spectrum Disorder . Journal of Autism and Developmental Disorders, 46(1), 31-41. Springer Science and Business Media LLC.
    Type: Article DOI: 10.1007/s10803-015-2535-1 OpenAlex: https://openalex.org/W1457101468
    Crossref OpenAlex OpenCitations
  5. Jason Baumgartner , Savvas Zannettou , Brian Keegan , Megan Squire , Jeremy Blackburn (2020). The Pushshift Reddit Dataset . Proceedings of the International AAAI Conference on Web and Social Media, 14, 830-839. Association for the Advancement of Artificial Intelligence (AAAI).
    Type: Article DOI: 10.1609/icwsm.v14i1.7347 OpenAlex: https://openalex.org/W3002330681
    Crossref OpenAlex OpenCitations
  6. Yunhe Huang , Ye In (Jane) Hwang , Samuel R. C. Arnold , Lauren P Lawson , Amanda Richdale , Julian Trollor (2022). Autistic Adults’ Experiences of Diagnosis Disclosure . Journal of Autism and Developmental Disorders, 52(12), 5301-5307. Springer Science and Business Media LLC.
    Type: Article DOI: 10.1007/s10803-021-05384-z OpenAlex: https://openalex.org/W4206778082
    Crossref OpenAlex OpenCitations
  7. Virginia Braun , Victoria Clarke (2006). Using thematic analysis in psychology . Qualitative Research in Psychology, 3(2), 77-101. Informa UK Limited.
    Type: Article DOI: 10.1191/1478088706qp063oa OpenAlex: https://openalex.org/W1979290264
    Crossref OpenAlex OpenCitations
  9. Stephanie Petty , Shannon Allen , Hannah Pickup , Bethannie Woodier (2023). A Blog-Based Study of Autistic Adults' Experiences of Aloneness and Connection and the Interplay with Well-Being: Corpus-Based and Thematic Analyses . Autism in Adulthood, 5(4), 437-449. SAGE Publications.
    Type: Article DOI: 10.1089/aut.2022.0073 OpenAlex: https://openalex.org/W4361003586
    Crossref OpenAlex OpenCitations
  10. Oren Shtayermman (2009). An exploratory study of the stigma associated with a diagnosis of Asperger’s syndrome: The mental health impact on the adolescents and young adults diagnosed with a disability with a social nature . Journal of Human Behaviour in the Social Environment, 19(3), 298. Informa UK Limited.
    Type: Article DOI: 10.1080/10911350902790720 OpenAlex: https://openalex.org/W2034287721
    Crossref OpenAlex OpenCitations
  12. Avery E. Holton , Laura C. Farrell , Julie L. Fudge (2014). A Threatening Space?: Stigmatization and the Framing of Autism in the News . Communication Studies, 65(2), 189-207. Informa UK Limited.
    Type: Article DOI: 10.1080/10510974.2013.855642 OpenAlex: https://openalex.org/W2095539890
    Crossref OpenAlex OpenCitations
  15. Braun V. (2013). Successful qualitative research: A practical guide for beginners . Successful qualitative research: A practical guide for beginners, 173.
    Type: Other
    Crossref
  16. Armita Farsinejad , Ailsa Russell , Catherine Butler (2022). Autism disclosure – The decisions autistic adults make . Research in Autism Spectrum Disorders, 93, 101936. Elsevier BV.
    Type: Article DOI: 10.1016/j.rasd.2022.101936 OpenAlex: https://openalex.org/W4212904997
    Crossref OpenAlex OpenCitations
  17. Tiffany D. Johnson , Aparna Joshi (2016). Dark clouds or silver linings? A stigma threat perspective on the implications of an autism diagnosis for workplace well-being. Journal of Applied Psychology, 101(3), 430-449. American Psychological Association (APA).
    Type: Article DOI: 10.1037/apl0000058 OpenAlex: https://openalex.org/W2398172144
    Crossref OpenAlex OpenCitations
  18. Virginia Braun , Victoria Clarke (2019). Reflecting on reflexive thematic analysis . Qualitative Research in Sport, Exercise and Health, 11(4), 589-597. Informa UK Limited.
    Type: Article DOI: 10.1080/2159676x.2019.1628806 OpenAlex: https://openalex.org/W2950504429
    Crossref OpenAlex OpenCitations
  20. Noah Sasson , Daniel J. Faso , Jack Nugent , Sarah Lovell , Daniel P. Kennedy , Ruth B. Grossman (2017). Neurotypical Peers are Less Willing to Interact with Those with Autism based on Thin Slice Judgments . Scientific Reports, 7(1), 40700. Springer Science and Business Media LLC.
    Type: Article DOI: 10.1038/srep40700 OpenAlex: https://openalex.org/W2585989266
    Crossref OpenAlex OpenCitations
  21. Laura Hull , K.V. Petrides , Carrie T. Allison , P. Smith , Simon Baron-Cohen , Meng-Chuan Lai et al. (2017). “Putting on My Best Normal”: Social Camouflaging in Adults with Autism Spectrum Conditions . Journal of Autism and Developmental Disorders, 47(8), 2519-2534. Springer Science and Business Media LLC.
    Type: Article DOI: 10.1007/s10803-017-3166-5 OpenAlex: https://openalex.org/W2616560149
    Crossref OpenAlex OpenCitations
  22. Eilidh Cage , Zoe Troxell-Whitman (2019). Understanding the Reasons, Contexts and Costs of Camouflaging for Autistic Adults . Journal of Autism and Developmental Disorders, 49(5), 1899-1911. Springer Science and Business Media LLC.
    Type: Article DOI: 10.1007/s10803-018-03878-x OpenAlex: https://openalex.org/W2909219349
    Crossref OpenAlex OpenCitations
  23. S. Mo Jang , Brooke W. Mckeever , Robert Mckeever , Joon Kyoung Kim (2019). From Social Media to Mainstream News: The Information Flow of the Vaccine-Autism Controversy in the US, Canada, and the UK . Health Communication, 34(1), 110-117. Informa UK Limited.
    Type: Article DOI: 10.1080/10410236.2017.1384433 OpenAlex: https://openalex.org/W2762353456
    Crossref OpenAlex OpenCitations
  24. Eilidh Cage , Zoe Troxell-Whitman (2020). Understanding the relationships between autistic identity, disclosure, and camouflaging . Autism Adulthood, 2(4), 334-338. SAGE Publications.
    Type: Article DOI: 10.1089/aut.2020.0016 OpenAlex: https://openalex.org/W3073966041
    Crossref OpenAlex OpenCitations
  25. Sally Lindsay , Victoria Osten , Mana Rezai , Sunny Bui (2021). Disclosure and workplace accommodations for people with autism: a systematic review . Disability and Rehabilitation, 43(5), 597-610. Informa UK Limited.
    Type: Article DOI: 10.1080/09638288.2019.1635658 OpenAlex: https://openalex.org/W2953880694
    Crossref OpenAlex OpenCitations
  26. Eszter Hargittai (2020). Potential Biases in Big Data: Omitted Voices on Social Media . Social Science Computer Review, 38(1), 10-24. SAGE Publications.
    Type: Article DOI: 10.1177/0894439318788322 OpenAlex: https://openalex.org/W2885312348
    Crossref OpenAlex OpenCitations
  27. Hamidreza Shahbaznezhad , Rebecca Dolan , Mona Rashidirad (2021). The Role of Social Media Content Format and Platform in Users’ Engagement Behavior . Journal of Interactive Marketing, 53(1), 47-65. SAGE Publications.
    Type: Article DOI: 10.1016/j.intmar.2020.05.001 OpenAlex: https://openalex.org/W3035240583
    Crossref OpenAlex OpenCitations
  28. Julia Cook , Laura Hull , Laura Crane , Will Mandy (2021). Camouflaging in autism: A systematic review . Clinical Psychology Review, 89(102), 102080. Elsevier BV.
    Type: Article DOI: 10.1016/j.cpr.2021.102080 OpenAlex: https://openalex.org/W3198172085
    Crossref OpenAlex OpenCitations
  29. Georgina Taylor (2021). Editorial: Embracing neurodiversity in medicine . Australian Journal of General Practice, 50(3), 101-101. The Royal Australian College of General Practitioners.
    Type: Article DOI: 10.31128/ajgp-03-21-1234e OpenAlex: https://openalex.org/W3133136412
    Crossref OpenAlex OpenCitations
  30. Kirsten Corden , Rebecca Brewer , Eilidh Cage (2022). A systematic review of healthcare professionals’ knowledge, self-efficacy and attitudes towards working with autistic people . Review Journal of Autism and Developmental Disorders, 9(3), 386. Springer Science and Business Media LLC.
    Type: Article DOI: 10.1007/s40489-021-00263-w OpenAlex: https://openalex.org/W3163025874
    Crossref OpenAlex OpenCitations
  31. Meng-Chuan Lai , Caroline Kassee , Richard Besney , Sarah Bonato , Laura Hull , Will Mandy et al. (2019). Prevalence of co-occurring mental health diagnoses in the autism population: a systematic review and meta-analysis . Lancet Psychiatry, 6(10), 819. Elsevier BV.
    Type: Article DOI: 10.1016/s2215-0366(19)30289-5 OpenAlex: https://openalex.org/W2936336589
    Crossref OpenAlex OpenCitations
  33. Sian Lloyd , Lisa A. Osborne , Phil Reed (2019). Personal experiences disclosed by parents of children with Autism Spectrum Disorder: A YouTube analysis . Research in Autism Spectrum Disorders, 64, 13-22. Elsevier BV.
    Type: Article DOI: 10.1016/j.rasd.2019.03.009 OpenAlex: https://openalex.org/W2938233638
    Crossref OpenAlex OpenCitations
  35. Rachel Jellett , Rebecca L. Flower (2024). How can psychologists meet the needs of autistic adults? Autism, 28(2), 520-522. SAGE Publications.
    Type: Article DOI: 10.1177/13623613221147346 OpenAlex: https://openalex.org/W4316034790
    Crossref OpenAlex OpenCitations
  36. Martijn Dekker * (2020). From Exclusion to Acceptance: Independent Living on the Autistic Spectrum . In Autistic Community and the Neurodiversity Movement (pp. 41-49). Springer Singapore.
    Type: Book chapter DOI: 10.1007/978-981-13-8437-0_3 OpenAlex: https://openalex.org/W2985680735
    AutiHub · Autistic Autism Scholarship Project Crossref OpenAlex OpenCitations
  37. den Houting J (2021). Participatory and Inclusive Autism Research Practice Guides . Participatory and Inclusive Autism Research Practice Guides, 192236536X.
    Type: Other
    Crossref
  38. Dixon S. (2022a). Average monthly users (MAU) of Reddit from April 2018 to January 2020. Statistica. https://www.statista.com/statistics/1324258/reddit-monthly-active-users/
    Type: Other
    Crossref
  39. Dixon S. (2022b). Number of Twitter users worldwide from 2019 to 2024. Statistica. https://www.statista.com/statistics/303681/twitter-users-worldwide/
    Type: Other
    Crossref
  40. Justine Egner (2022). #ActuallyAutistic: Using Twitter to Construct Individual and Collective Identity Narratives . Studies in Social Justice, 16(2), 349-369. Brock University Library.
    Type: Article DOI: 10.26522/ssj.v16i2.2675 OpenAlex: https://openalex.org/W4220776396
    Crossref OpenAlex OpenCitations
  41. Julia Sterman , Erin Gustafson , Lindsay Eisenmenger , Lizzie Hamm , Jules Edwards (2023). Autistic Adult Perspectives on Occupational Therapy for Autistic Children and Youth . OTJR: Occupational Therapy Journal of Research, 43(2), 237-244. SAGE Publications.
    Type: Article DOI: 10.1177/15394492221103850 OpenAlex: https://openalex.org/W4283079101
    Crossref OpenAlex OpenCitations
  42. Sandra Hodgetts , Chantal Labonte , Rinita Mazumder , Shanon Phelan (2020). Helpful or harmful? a scoping review of perceptions and outcomes of autism diagnostic disclosure to others . Res Autism Spectr Disord, 77(101), 101598. Elsevier BV.
    Type: Article DOI: 10.1016/j.rasd.2020.101598 OpenAlex: https://openalex.org/W3038469061
    Crossref OpenAlex OpenCitations
  43. Mikaela Finn , Rebecca L. Flower , Han Ming Leong , Darren Hedley (2023). ‘If I’m just me, I doubt I’d get the job’: A qualitative exploration of autistic people’s experiences in job interviews . Autism, 27(7), 2086-2097. SAGE Publications.
    Type: Article DOI: 10.1177/13623613231153480 OpenAlex: https://openalex.org/W4321004272
    Crossref OpenAlex OpenCitations
  44. Rosa Fontes , Margarita Pino-Juste (2022). Portrayals of autism and social awareness . Adv. Autism, 8(3), 196. Emerald.
    Type: Article DOI: 10.1108/aia-02-2021-0014 OpenAlex: https://openalex.org/W3190353119
    Crossref OpenAlex OpenCitations
  45. Nicholas Proferes , Naiyan Jones , Sarah Gilbert , Casey Fiesler , Michael Zimmer (2021). Studying Reddit: A Systematic Overview of Disciplines, Approaches, Methods, and Ethics . Social Media + Society, 7(2). SAGE Publications.
    Type: Article DOI: 10.1177/20563051211019004 OpenAlex: https://openalex.org/W3167344319
    Crossref OpenAlex OpenCitations
  47. Miriam Harmens , Felicity Sedgewick , Hannah Hobson (2022). The Quest for Acceptance: A Blog-Based Study of Autistic Women's Experiences and Well-Being During Autism Identification and Diagnosis . Autism in Adulthood, 4(1), 42-51. SAGE Publications.
    Type: Article DOI: 10.1089/aut.2021.0016 OpenAlex: https://openalex.org/W3201302602
    Crossref OpenAlex OpenCitations
  48. Eric Rubenstein , Sarah Furnier (2021). #Bias: The Opportunities and Challenges of Surveys That Recruit and Collect Data of Autistic Adults Online . Autism in Adulthood, 3(2), 120-128. SAGE Publications.
    Type: Article DOI: 10.1089/aut.2020.0031 OpenAlex: https://openalex.org/W3102111285
    Crossref OpenAlex OpenCitations
  49. Emeline Han , Katrina Scior , Katerina Avramides , Laura Crane (2022). A systematic review on autistic people's experiences of stigma and coping strategies . Autism Research, 15(1), 12-26. Wiley.
    Type: Article DOI: 10.1002/aur.2652 OpenAlex: https://openalex.org/W4200200179
    Crossref OpenAlex OpenCitations
  50. Matthew R. Jamnik , David J. Lane (2017). The Use of Reddit as an Inexpensive Source for High-Quality Data . Practical Assessment, Research & Evaluation, 22(1), 1. University of Massachusetts Amherst.
    Type: Article DOI: 10.7275/j18t-c009 OpenAlex: https://openalex.org/W3166746986
    OpenAlex
  51. Anna Melissa Romualdez , Zachary Walker , Anna Remington (2021). Autistic adults’ experiences of diagnostic disclosure in the workplace: Decision-making and factors associated with outcomes . Autism & Developmental Language Impairments, 6, 23969415211022956. SAGE Publications.
    Type: Article DOI: 10.1177/23969415211022955 OpenAlex: https://openalex.org/W3171777987
    Crossref OpenAlex OpenCitations
  52. Jamnik M. R., Lane D. J. (2017). The use of Reddit as an inexpensive source for high-quality data. Practical Assessment, Research, and Evaluation, 22(1), 5. https://doi.org/10 . 7275/j18t-c009
    Type: Other
    Crossref
  54. Muggleton J., Hawker D., Henshaw E., Horne K., Hutchinson J., Little L., Nicholls A., Welsh P. (2022). Neurodiversity is not just for those we work with: A group of psychologists write. The Psychologist, 35, 2–5. https://www.bps.org.uk/psychologist/neurodiversity-not-just-those-we-work
    Type: Other
    Crossref
  55. John Jamieson , Virginia Braun , Victoria Clarke (2014). Successful Qualitative Research: A practical guide for beginners . QMiP Bulletin, 1(18), 39-41. British Psychological Society.
    Type: Article DOI: 10.53841/bpsqmip.2014.1.18.39 OpenAlex: https://openalex.org/W4364348136
    OpenAlex